The Nihei's: Our Story

On April 1, 2008, our 4-year-old daughter, Lauren, was diagnosed with a brain tumor. After her biopsy on April 8th it was determined that she had a bithalamic anaplastic astrocytoma with extension into her brain stem.

In the beginning of March we noticed a personality change in Lauren who normally is a very outgoing and happy-go-lucky kid. She became very clingy and shy. She didn't want to talk on the phone anymore, or play on the slide with the other kids at pre-school. By mid-March, Lauren started complaining about headaches. Her pediatrician thought it might be a sinus infection or that she may need glasses. He put her on antibiotics and we made an eye appointment.

A few days later when she started holding her head funny and her headaches returned we insisted on a CT scan. That's when her pediatrician sent us to the ER at Children's Hospital of Orange County (CHOC) for a CT scan, and when our world was turned upside down and our nightmare began...

Story continues at bottom of page

Monday, August 11, 2008

Lauren is still in the hospital. She doesn't have a fever anymore, but her ANC count had dropped from .20 to zero on Friday. Her most recent blood test, which was this morning, indicated it was still at zero. This is the lowest and longest it's been down that it's ever been. It's taking longer and longer for her counts to come back after each treatment. Ana, our nurse practitioner, said this is to be expected, that the chemo treatment she is on is cumulative and that is why she can only have four cycles of the current treatment. She also said the next phase will be worse and it will take a lot longer for her counts to recover. So that is something we're not looking forward too. On the bright side... it can't drop any lower. Her white blood cell (which is used in the ANC calculation) count went up slightly on Sunday, which the doctor indicated is usually the first sign her counts are beginning to turn around (don't know what today's white blood cell count was).

Lauren is scheduled to have her hearing test today and hopefully her ECHO test. The hospital had wanted to try and get them all (hearing, ECHO, eye, EKG) done over the weekend, but was unable to squeeze her in. However, we were able to do her kidney test, which is the simplest (peeing in a cup), but causes the most anxiety since we don't ever want her to have to do it with the radiation again. Thankfully she passed it. She is scheduled to have her next MRI on Aug. 25th and a spinal tap on Aug. 26th.

Even though her counts are low, she is in as good a mood as you can expect considering she is cooped up in the hospital. She is more bored than tired, and keeps asking when she can go home. She is like a caged animal, and just paces around the hospital floor. She hates to sit in her hospital bed. There is only so many videos and board games she can play. Hopefully her counts will go up soon so she can go home.

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